Jamie and I set out at 10:30A for a 4:30P Proton appointment, on what usually is about a three and half hour ride form Port Washington, NY to Boston, MA. What do they say “best laid plans”? Instead it turned out be a five and half hour ride, we got into Boston at about 4P. It wasn't like this last week, maybe it was because of the holiday coming up, but it seemed like all people were on the road at the same time, heading to places North. By the time we unloaded our stuff and dropped off the car at the garage it was about 4:15P…but this way okay. Just as I was starting to wonder if I would make my appointment on time after leaving what I thought was a comfortable 6 hours between leaving New York and my appointment in Boston...I got a call. My 4:30P Proton session needed to be moved; I was instead to go to regular radiation in another building at 7P. See how everything just works out? LOL! And I was worried about the mask.
Turns out that the Proton machine was down today (this happens, I’m told). The calibration on the machine is so precise that should it become even slightly off, they shut down the machine for repair and reschedule all Proton patients to the conventional radiation location. Hard to complain about this, precision is everything when it comes to radiation.
Jamie and I shopped at Whole Foods, and then went to my 7P appointment, which became more like 7:30P, because my chart hadn’t been sent over yet. The chart arrived. They did their usual “hold still”, and we were out of there in no time.
My thoughts…the machinery may be precise, but the scheduling is not. Quite the day. Time to sleep.
Monday, June 30, 2008
The Weekend
What can I say…I was really glad to get home, and then it was Sunday.
I felt strong enough to go to my 8A yoga class on Saturday...very happy about that. We created a healing circle, and then my yogamates asked me how I was doing. I said that I was feeling okay and that I had just completed my first week of radiation. The group clapped and congratulated me as if I had just completed something quite enormous...like I had completed a Marathon, or completed my Masters degree, or maybe completed my first week of sobriety. I felt a bit shy about receiving this attention for completing a week of radiation. I gathered up my yoga things, and said goodbye, and as I thought more about this attention, I thought this is worth applauding, not because I did all that much this week, but because I was now one week closer to being at the end of my own Marathon.
On Sunday it's time to pack up again, and get on the road. Monday is Rachel’s first day at Day Camp, she's really excited.. and I’m glad I can see her off on the bus before she goes. Jon stays behind this week and works, Jamie comes with me...and she's really excited. Just kidding. This will be a short week, no radiation on Friday. It’s everyone’s holiday weekend, even Proton Center. We’ll be home on Thursday afternoon, provided traffic is not insane, if it is…we’ll be home Thursday night. Thinking about the mask…obsessing about the mask. Feel okay, felt better, felt worse. I think I mostly feel tired.
I felt strong enough to go to my 8A yoga class on Saturday...very happy about that. We created a healing circle, and then my yogamates asked me how I was doing. I said that I was feeling okay and that I had just completed my first week of radiation. The group clapped and congratulated me as if I had just completed something quite enormous...like I had completed a Marathon, or completed my Masters degree, or maybe completed my first week of sobriety. I felt a bit shy about receiving this attention for completing a week of radiation. I gathered up my yoga things, and said goodbye, and as I thought more about this attention, I thought this is worth applauding, not because I did all that much this week, but because I was now one week closer to being at the end of my own Marathon.
On Sunday it's time to pack up again, and get on the road. Monday is Rachel’s first day at Day Camp, she's really excited.. and I’m glad I can see her off on the bus before she goes. Jon stays behind this week and works, Jamie comes with me...and she's really excited. Just kidding. This will be a short week, no radiation on Friday. It’s everyone’s holiday weekend, even Proton Center. We’ll be home on Thursday afternoon, provided traffic is not insane, if it is…we’ll be home Thursday night. Thinking about the mask…obsessing about the mask. Feel okay, felt better, felt worse. I think I mostly feel tired.
Day Five
Day Five
10:15A on Friday was my fifth treatment, but only my second one at the Proton Center. It seemed like I was just there. I was, I had been there at 5P yesterday. We arrived on time but had to wait about a half hour before I was able to slip into the mask (it’s too early for me to start disliking this mask, but I do…got to work on that). Can this treatment really be only 20 minutes? It seems twice that long while I’m suspending in a space with no real light, no movement, only an occasional chime from the machine, or a beep from the closing door. Jon suggests afterward that we put together a CD for me to listen to during treatment, and make it as close to the length of the treatment as we can, that way I would have a sense of how much time had passed…and more importantly…how much more time was left to go. I think this is a really great idea! I’ll have to work on it this weekend when I’m home. The session ended, we waited to speak to my doctor (this will be an every Friday event). He asked me how I was feeling, to which I responded “tired and queasy”, and he said “that’s good, that’s how we know it’s working”. He could not know how funny this was, but the last time someone said that to me, I was pregnant with Jamie. My obstetrician asked me how I was feeling, I told her “sick to my stomach…all the time” What did she say? “I like to hear that my pregnant mothers are nauseous, that means that everything is going well”. She was right...everything did turn out well. Definitely seems like nausea is friend, not foe…I will try and keep this mind.
Jon and I headed back to the apartment; we left some of our bits and pieces behind, so less to lug back and forth. We hit the road. After about 90 miles we decided to stop at a roadside diner in Connecticut called Shady Glen…very good burgers, and a great chocolate ice cream soda with mocha chip ice cream. If you’re ever in Manchester, Ct., and looking for some comforting, comfort food…I highly recommend the place.
As so it goes, one week down, six more to go.
10:15A on Friday was my fifth treatment, but only my second one at the Proton Center. It seemed like I was just there. I was, I had been there at 5P yesterday. We arrived on time but had to wait about a half hour before I was able to slip into the mask (it’s too early for me to start disliking this mask, but I do…got to work on that). Can this treatment really be only 20 minutes? It seems twice that long while I’m suspending in a space with no real light, no movement, only an occasional chime from the machine, or a beep from the closing door. Jon suggests afterward that we put together a CD for me to listen to during treatment, and make it as close to the length of the treatment as we can, that way I would have a sense of how much time had passed…and more importantly…how much more time was left to go. I think this is a really great idea! I’ll have to work on it this weekend when I’m home. The session ended, we waited to speak to my doctor (this will be an every Friday event). He asked me how I was feeling, to which I responded “tired and queasy”, and he said “that’s good, that’s how we know it’s working”. He could not know how funny this was, but the last time someone said that to me, I was pregnant with Jamie. My obstetrician asked me how I was feeling, I told her “sick to my stomach…all the time” What did she say? “I like to hear that my pregnant mothers are nauseous, that means that everything is going well”. She was right...everything did turn out well. Definitely seems like nausea is friend, not foe…I will try and keep this mind.
Jon and I headed back to the apartment; we left some of our bits and pieces behind, so less to lug back and forth. We hit the road. After about 90 miles we decided to stop at a roadside diner in Connecticut called Shady Glen…very good burgers, and a great chocolate ice cream soda with mocha chip ice cream. If you’re ever in Manchester, Ct., and looking for some comforting, comfort food…I highly recommend the place.
As so it goes, one week down, six more to go.
Thursday, June 26, 2008
Day Four...First Proton Therapy Treatment
Proton Therapy is serious business; in comparison to the Conventional Radiation experience it seems quite formidable.
The Proton Radiation Room is huge, the equipment is state of the art…it looks like something from “2001-A Space Odyssey”. The table I sit on moves in and out of a large cyclotron that delivers a pin-pointed beam that starts some three floors away. There is music playing…whatever you want; there’s no music in conventional radiation, not even if you wanted it. I lie on a table, no one matches my tattoos, no one seems to even care that I have them. The mask that I was fitted for a couple of weeks ago is strapped to my face, a la Hannibal Lecter. It is tight, practically suctioned to my face. Small glitch though, somehow even though this mask was made for my face, something has changed, my nose bumps out where the mask bumps in…adjustments have to be made. No way would I be able to stand twenty minutes a day with this on my face, and have it boring into my bumpy nose. They fix it. It’s better, but some serious visualization has to happen here,…I’m thinking facial again. The mask prevents me from seeing anything, my eyes can’t open, my mouth can't open…I am strapped. I am told through a speaker that the treatment will start. I'm asked if I’m okay?; funny though because I couldn't speak even if I wanted to…I give a thumbs up, which they can see on one of the many cameras where they are seated…in the other room. In case of emergency, I have a button to push. I wonder as I’m strapped into my mask not able to be anything but still…”what would be emergency enough to push this button and grind this process to a halt?” There is a low sort of long beep sound. I lie here wondering, visualizing, I think about what I’m going to be doing later,…I think about this beam and what it is doing. The beam stops, someone says “Okay, that’s the end of the treatment for today, see you tomorrow”. I think to myself “this word treatment seems so weird “; before this process, treatments brought images of hot stones, massages and facials. Guess one person’s mud is another person’s radiation.
The Proton Radiation Room is huge, the equipment is state of the art…it looks like something from “2001-A Space Odyssey”. The table I sit on moves in and out of a large cyclotron that delivers a pin-pointed beam that starts some three floors away. There is music playing…whatever you want; there’s no music in conventional radiation, not even if you wanted it. I lie on a table, no one matches my tattoos, no one seems to even care that I have them. The mask that I was fitted for a couple of weeks ago is strapped to my face, a la Hannibal Lecter. It is tight, practically suctioned to my face. Small glitch though, somehow even though this mask was made for my face, something has changed, my nose bumps out where the mask bumps in…adjustments have to be made. No way would I be able to stand twenty minutes a day with this on my face, and have it boring into my bumpy nose. They fix it. It’s better, but some serious visualization has to happen here,…I’m thinking facial again. The mask prevents me from seeing anything, my eyes can’t open, my mouth can't open…I am strapped. I am told through a speaker that the treatment will start. I'm asked if I’m okay?; funny though because I couldn't speak even if I wanted to…I give a thumbs up, which they can see on one of the many cameras where they are seated…in the other room. In case of emergency, I have a button to push. I wonder as I’m strapped into my mask not able to be anything but still…”what would be emergency enough to push this button and grind this process to a halt?” There is a low sort of long beep sound. I lie here wondering, visualizing, I think about what I’m going to be doing later,…I think about this beam and what it is doing. The beam stops, someone says “Okay, that’s the end of the treatment for today, see you tomorrow”. I think to myself “this word treatment seems so weird “; before this process, treatments brought images of hot stones, massages and facials. Guess one person’s mud is another person’s radiation.
Day Three...Conventional Radiation
I have to hold very still. My head is laid on an “immobilizing device”, to the non-medical everyday man this looks like a piece of plastic that fits your head. Certain adjustments are made,…chin up, tilt this way, tilt that way, the technicians line up my previously made tattoos, a piece of surgical tape is stretched across my forehead to keep me…very still. The technicians leave the room and step behind a foot thick door, and I stay behind. The table moves, the machinery moves around me, I notice a red beam of light, some high pitch sound, I can open my eyes and look around…but only my eyes can move…not my head…I have to lie very still. If I move the radiation will not target what it needs to…I think I really need to swallow, but I won’t, because I need to do this right. The beam stops, the high pitched sound stops, the foot thick door opens. The tape is removed, the table is lowered, and off I go onto my day. “Have a nice day”, the techs say to me “See you tomorrow”. It feels like no big deal, but it so is…as soon as I get off the table I feel not the same as when I got on…a bit dizzy, a bit seasick, wiped…like I’ve definitely been through something.
Jon and I head back to the apartment, where I need…need to rest for a while. We think about what I’m up for, and where to go. I could easily lie around all day…but I won’t, if I can go…I’m going. We decide to take a road trip to Ipswich for Ipswich Clams (about a 45 minute ride), and then to Richardson’s Ice Cream (an ice creamery where they milk their own cows, and make their own ice cream). I have Kahlua Fudge Brownie and Peppermint Stick in a cup, and Jon has a Coffee Fudge Oreo Cone. The portions are huge and delicious. This is entertainment!
Jon and I head back to the apartment, where I need…need to rest for a while. We think about what I’m up for, and where to go. I could easily lie around all day…but I won’t, if I can go…I’m going. We decide to take a road trip to Ipswich for Ipswich Clams (about a 45 minute ride), and then to Richardson’s Ice Cream (an ice creamery where they milk their own cows, and make their own ice cream). I have Kahlua Fudge Brownie and Peppermint Stick in a cup, and Jon has a Coffee Fudge Oreo Cone. The portions are huge and delicious. This is entertainment!
Tuesday, June 24, 2008
Day 1...and 2
After a late start...of course, Jon and I got up to to Boston about 2P...moved into the apartment, (that didn't take long), and took the three block walk over to the hospital for my first radiation session at 3P. These first few sessions will be conventional radiation, not Proton (so no mask). I was wiped out afterwards, I'm sure not from the treatment but more from the day. We came back and unpacked, we went shopping at the Whole Foods across the street (very convenient), we ate, and then it all washed over me how much we had gone through to get to this day. Big Day. I so want this to work.
Today's appointment was at 8:30A, back on the same table, a zap here, a zap there, a zap here and there, and I'm done. I feel tired, but not as emotionally exhasuted. Think Jon and I will go to the movies.
Today's appointment was at 8:30A, back on the same table, a zap here, a zap there, a zap here and there, and I'm done. I feel tired, but not as emotionally exhasuted. Think Jon and I will go to the movies.
Monday, June 23, 2008
Meet Mr. Dubenschmeimer
Meet Mr. Dubenschmeimer, so named by my 12 year old daughter Rachel. This tumor has been a presence in her life as long as she can remember, and I guess she felt it should have a name. Anyway, it sort of fits. It’s a serious name, without being so formidable that you couldn’t take it down in a fight.Mr. Dubenschmeimer is rude, he has definitely overstayed his welcome. He’s intrusive. He leans on the carotid artery, and bangs into all his neighbors (the cranial nerves that I need to see, hear, swallow, speak). He gives new meaning to the phrase from the song “Getting to Know You”, he has definitely “become part of the furniture”, he in fact has become the furniture. Mr. Debenschmeimer has invaded the skull base so totally, that he actually has become the skull-base, which is why he can’t be removed, so instead he will become something closer to petrified after the radiation.
Mr. Dubenschmeimer is that fairly large (to be inside your head, anyway), irregular shaped bright white mass on the right side of this picture. Wish I had a pointer, but you will figure it out I’m sure.
Goodbye to Mr. Dubenschmeimer.
Mr. Dubenschmeimer is that fairly large (to be inside your head, anyway), irregular shaped bright white mass on the right side of this picture. Wish I had a pointer, but you will figure it out I’m sure.
Goodbye to Mr. Dubenschmeimer.
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